Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, November 9, 2012

Massachusetts Votes No on Question 2

In Massachusetts Question 2 was defeated. Question
2 was a death with dignity initiative
modeled after the laws in Washington and Oregon. As little as a month ago it
looked like the legislation would be passed into law. One poll maintained 68%
of people were in favor and only 19% opposed.Compassion and Choices, formerly the Hemlock Society, put their full
weight and power in advocating for “death with dignity” in Massachusetts. The
defeat of Question 2 was a great victory for two disability rights groups; Not Dead Yet and Second Thoughts. I
tip my hate to Steve Drake and Diane Coleman of Not Dead Yet and John Kelly of
Second Thoughts. Lest I mislead readers, a diverse coalition of groups led to
the defeat of Question 2.High praise though goes to one man—John Kelly—who I have not met. He worked tirelessly in
the months leading up to the election. He came across as reasoned and
articulate even when confronted with questionable views that had no basis in
fact.I urge readers to listen to
Kelly debate Marcia Angell on NPR All Things Considered. See link: http://radioboston.wbur.org/2012/09/18/question-two-death-dignityhttp://www.necn.com/pages/video?PID=PPdLmLW_D_7kVBQhMh8nkZDs0ChuVVajKelly was
understandably thrilled with the election results. He stated:

This vote confirms that Massachusetts voters saw
through the rhetoric and outright misinformation put out by those supporting assisted suicide.
Opposition to assisted
suicide cuts across all partisan and ideological groups because the
more people learn about the issue, the more they have second thoughts. Assisted suicide doesn't
expand choice, it limits choice – and that puts at risk anyone living with a disability,
mental illness or serious illness.

It is my sincere hope that not only will President
Obama seize upon the election results but disability rights groups will do so as
well. The opportunity is laid before us to
marginalize the conservative right wing and hopefully eliminate groups such as the Tea Party. This
is an opportunity Obama must seize. We in disability rights must do our part as
well. In Massachusetts for one of the first times in recent memory, if ever, the general
public was exposed to a disability rights perspective. In part, this was
because we were galvanized in our opposition to Question 2 and other death with
dignity laws. The facts are on our side—scratch the surface, do some reading
and it becomes clear—assisted suicide legislation is inherently dangerous and
more to the point not necessary. Do not be swayed by sob stories the mainstream
media hypes about people dying in agony. People die poorly because we do not
discuss end of life issues.If it were
up to me Ira Byock’s The Best Care Possible: A Physician’s Quest to Transform
Care Through the End of Life would be required reading for all Americans.I do not dispute the fact many people die badly. However, Compassion and Choices sales pitch—we have the right to die is nothing more
than a meaningless slogan. Proponents of assisted suicide want to control not
death but its methodology. They state repeatedly that we should control how and when we die. This is
deceptively simple. Of course we should have such control! Not so fast. Why do
people want to die? People die because they do not want to lose their dignity.
People want to remain independent. People fear losing control of bodily
functions. People fear medical bankruptcy. All these fears have solutions and
in most cases the problem is less physiological and more social. With proper
social supports people can retain their autonomy and dignity. With proper
medication, people need not suffer from pain.

Do we really want to enter a world in which people
such as Barbara Wagner are denied chemotherapy for late stage lung cancer in
Oregon (it would have cost $4,000 a month and was not approved for her
condition)? In its place the Oregon Health Care Plan office was willing to
cover a lethal prescription.When it
comes to the intersection of medical costs, personal experience, and concerns
about vulnerability, it behooves us to listen to people with a disability.
Proponents of assisted suicide dismiss our concerns and quickly point out there
is no record of abuse in Oregon and Washington. Worse yet they think disability rights groups are pawns of the Catholic Church. Abuse is not reported because
ending the life of an elderly, terminally ill or disabled person can and often
is perceived as an act of compassion. It is rarely if ever considered a crime.
This is a significant problem as the line between life and death is razor thin
and easily manipulated. Social factors figure in prominently. I urge people to read a story recently published
in Health Affairs by David Muller, “Physician-Assisted Death is Illegal in Most
States, So My Patient Made Another Choice”. See link: http://content.healthaffairs.org/content/31/10/2343.full This article scared me and made me
realize yet again how dangerous accessing health care can be for vulnerable populations.
Muller’s article was deceptive and illustrated that the line between a “hastened death” and
“assisted suicide” is subjective in the extreme. When I first read Muller’s
article I was stunned. My first thought was the elderly man he cared for was
murdered. Yes, I thought the article depicted a clear case of murder. Muller
was directly responsible for a patient’s death. In another post I will
deconstruct Muller’s article. There is only one point of agreement between
myself and Muller. He wrote: an enormous gap
exists between the thoughts many of us will have about aid in dying when we are
hopelessly or terminally ill and our willingness to discuss those thoughts with
a doctor. The reasons for that gap include the enormous social stigma
surrounding death and dying, the fear of being labeled “suicidal” or
“cowardly,” and the fear of alienating or disappointing one’s family members or
physician. I do not question a gap exists between patients and physicians. I do
not question the fact we fail to discuss end of life issues. I do however
question why Muller chose not to mention fear. Vulnerable people rightly fear
not only physicians but the health care system itself that is hostile to our
existence. A hostility Muller is utterly unaware of I suspect. We people who
are members of vulnerable populations are often an expensive drain on limited
resources. We may have a limited life expectancy or our existence itself may be
deemed “incompatible with life”. But we have rights, civil rights than cannot and should not be violated.

9 comments:

Mr. Bad Cripple, you have to take some responsibility for the defeat of Question 2 here in Massachusetts, as we used your powerful essay of your hospital experience to show how devalued our lives are inside the health care system. Thanks for the kind words, keep up the great work!

Obviously, I know that you would expect me to respond to the ballot initiative since I have written in support of Question 2 on several occasions. I have an abiding respect for your position and that of John Kelly. The following represents my perspective about what happened in MA. I live in Massachusetts and I care full time for a non-verbal son who has no movement, totally spastic. He is now 26 years old. I supported Questions 2 because it provides terminally ill people in their last days of intractable pain with a “good death” as opposed to a “bad death.” As late as mid October, all polls revealed that 65% of voters supported the legislation. Then something happened which I characterize as reprehensible.(1) Some groups extended the definition of terminally ill to severely disabled. “Question 2 stigmatizes conditions that are a normal part of living as disabled for many people. Physical incapacity or incontinence does not take away your dignity.” The quote comes NYD latest post. This is untrue: Question 2 only concerns terminally ill people and the vast, vast majority of disabled are NOT terminally ill. I find the co-mingling of these concepts as an insult to my son. Some disabled people can become terminally ill…opponents co-mingle the two populations. “Slippery slope”? By every definition, this is an epistemological fallacy. These arguments are fear-mongering, not unlike the WMD argument. Fear prevented continued support. (2) In the week and a half before the election a plethora of opponents television ads appeared daily in Massachusetts. They presented false information, partial truth, and raised fears which were unjustified. (3) The money trail. Although not readily admitted, the major funding for opponents came from the conservative Catholic Church, the American Principles Project, an anti-gay organization and the American Family Association , another anti-gay group (the latter had its money returned) and the Knights of Columbus. You can get what is bought. Proponents were outspent 5 to 1. (4) So, a convinced public changed its mind to a 51-49% victory for the opponents because of misinformation, because of co-mingling of issues, because of a tainted money trail.The actions of many opponents were not based upon facts, they fed the public fear…the heart of politics, not the integrity of examining both sides of the issue. Perhaps we should all take the proposed ballot initiative and modify it to incorporate whatever safeguards disability advocates desire and take care of the intractable suffering of the last days of dying. I am sorry for being so disagreeable in my beliefs.

John, If my Hastings Center essay helped defeat question 2 in some way I am thrilled. each and every time I saw, heard or read what you had to say I was impressed. You did an awesome job. Phil, I did indeed expect you to chime in and be very critical. I am not at all sure how to reply. Our exchange of comments on your blog was heated and accomplished nothing. I see little point in going down that road a second time. Hence, how do I reply without and foster an exchange that is productive? I will avoid the specifics of what you write as I believe they are in error. We could banter back and forth over this but to what end? So here is a more general reaction to the points you raise. 1. Terminally ill is poorly understood and is a vague concept. Like it or not the general public and some health care professionals link terminal illness and disability. In part this is due to the fact before one dies a disability becomes a part of life. But there was absolutely no effort on the part of disability rights activists to broaden the definition of terminal illness. Like you I do not like the connection made between terminal illness and disability. Yet many people, health care professionals included, do indeed make that connection. People with a disability have good reason to be fearful as a result. Unlike WMD that were not found, my experience was very real. 2. I did not see the ads on TV you refer to. I am sure much false information was spouted. Do you really take anything said in such ads seriously? Ads pro and con are propaganda. I dismiss all ads and instead read original essays and articles and the proposed law itself. I think for myself. 3. I do not have the figures but the pro assisted suicide groups (Compassion and Choices) have so much more money than groups like NDY and Second Thoughts it is like comparing an ant hill to a mountain. The effort by NDY and Second Thoughts are an amazing testament to the efforts of a few people in the face of great opposition--opposition that is well funded. As to the Catholic Church, the financial support is minimal at best. They have no influence, none, on the activities of NDY. To imply NDY was bought by the Catholic Church is wildly wrong. 4. You sound like a bitter conservative Republican on FOX. Misinformation and tainted money-come on you are way better than to cry foul because you are not happy with the election results. Finally, look at the stats from Oregon and Washington. Who takes advantage of the death with dignity laws? Well educated white men with financial resources who likely have cancer. Men who have had much control over the entire course of their life. Who then is vulnerable? People who are poor, lack an education, may or may not have a disability, and are vulnerable. Are these not the sort of people we should be safeguarding?

I understand the disappointment that advocates for this legislation must feel, because the motivation to relieve suffering is a worthy one. I cannot imagine that anyone involved in the support of this initiative has made that effort through anything less than compassionate motives, and their frustration is understandable.

The problem with these laws is that they are meant to apply to situations where there really is no further recourse to restore an acceptable quality of life for whatever time a person has left. Unfortunately, neither element of that filter is immune to being corrupted by flaws in the systemic and societal context. Both health care providers and consumers have powerful biases about what constitutes acceptable quality of life. AND, the question of what recourse is available is subject to the allocation of resources which are becoming less and less accessible to vulnerable populations. When treatment options, methods of pain relief, and support services that could improve quality of life actually exist, but are out of reach for an individual, is it really compassionate to offer that person the chance to end their life rather than to advocate for their access to resources? The potential for the assisted suicide option to let our society and health care system off the hook is a danger across the board, but it is a particular danger in the presence of disability. When disability comes into play, the ability of non-disabled decision-makers to distinguish the societal and economic barriers that block the path to quality of life from the limitations inherent to the disability itself becomes wildly unreliable. The bottom line is that "the co-mingling of issues" to which Phil refers is not an invented strategy on the part of opponents; it is what actually happens in the real-life implementation of laws like this. The ambiguities that arise from that co-mingling provide an incubator for a whole range of collateral damage that would be unimaginable and unrecognizable to compassion-motivated advocates of assisted suicide.

I can't help but wonder what might have happened if assisted suicide had been made available during the height of the AIDS epidemic. How might the discrimination that AIDS patients already experienced in the health care system have been further unleashed, especially given that the most staunch advocates many of those individuals had were barred from partaking in their medical decisions? The more I think about it, the more horrifying the hypothetical scenario becomes. Beyond what might have befallen many individuals, would the medical community still have developed the effective treatments that are allowing many HIV+ people to live long, productive lives today? It seems possible to me that the whole perspective on the diagnosis might have shifted away from treatment and research, at least incrementally. I don't in any way mean to equate AIDS, or any other disease, with disability; it's just an example that, to me, illuminates the danger of opening the door to "giving up" on any population that experiences vulnerability within the healthcare system because of cultural and societal biases.

At the same time, there are few better examples of "bad deaths" than those seen during the AIDS epidemic. How can we avert that kind of suffering *without* opening the door to the pitfalls of this kind of legislation? It's a hard problem to which I hope there are solutions.

"The bottom line is that "the co-mingling of issues" to which Phil refers is not an invented strategy on the part of opponents; it is what actually happens in the real-life implementation of laws like this. The ambiguities that arise from that co-mingling provide an incubator for a whole range of collateral damage that would be unimaginable and unrecognizable to compassion-motivated advocates of assisted suicide." Exactly: the slippery slope. Whoever you are Lynn...well said, all of it.

Lynn and Claire, Great comment Lynn and a Claire wrote a perfect response. The co mingling of issues has potentially deadly consequences. Lynn, Your reference to the AIDS crisis and assisted suicide was fascinating. Makes you wonder and worry. Soon a simple test will be perfected that can determine whether a person will develop Alzheimer's Disease before symptoms are present. Researchers state the test can help people prepare for the ravages of the disease. I wonder though what percentage of people will be so fearful of the disease itself that they will demand assisted suicide. This sort of thought keep one up at night thinking.

This to Phil, who posted an almost identical comment on the NDY blog. It's taken awhile for me to catch up with things. I've posted his comment there and put up a reply. I am copying that reply here to make sure it gets seen:

***Phil,

I’ll answer this in excruciating detail some other time, but your comment is little more than a combination of talking points used by proponents decorated with a huge amount of ignorance.

1. Terminal vs. disabed, chronically ill, etc. – the so-called “right to die” people have been conflating “terminal” and “disabled” for decades. Two of the first endorsers of the Mass. petition were authors of the “Harvard Model Statute” which would have legalized assisted suicide for anyone terminally or “irreversibly ill.” You think they’ve changed their goals or just decided to go with the incrementalist strategy? In NH just a few years ago, they floated a bill that redefined “terminal” as irreversibly ill and would shorten your life. There’s more, and I’ll lay it out at a later time so I can drag it out for folks who buy RTD talking points without even a grain of salt.2. What that means is that the campaign used its money wisely. Also during those final weeks you had editorials/declarations against legalization from Ira Byock, Boston Globe (most newspapers in the state), Vickie Kennedy, several Democratic legislators, and the medical organizations. That might have had an impact as well.3. The Catholic Church is one interest group and it has money. NOt Dead Yet operates on a modest budget, doesn’t take money from prolife organizations, and neither did Second Thoughts. By your reckoning, should we all support the death penalty simply becauise the Catholic Church opposes it? I wouldn’t whine about money too much – in Washington State, the situation was reversed. Proponents had all the cash, most from out-of-state, including several multi-millionaires, one of whom lives in Europe.4. Support for assisted suicide is *always* lower in an actual vote than what the polls originally indicate. In every state it’s been on the ballot. Sometime let’s talk about the fearmongering and misinformation from the proponennts shall we?